My Journey to a Lupus Diagnosis: Advice for People Who are Newly Diagnosed

We will hear from Resa as she shares her journey starting when symptoms began to her diagnosis of lupus, providing her perspectives and advice for others who may be experiencing a similar situation.

[sandrak]

Totally me!!! I yelled at my husband ”why is everything so hard to open around here!?” I was mad 😂

[lesleyd]

This is very helpful. Auto immune Diseases need to be talked about more. My journey has very loonnggg of suffering with pain, lots of ER visits (no help) I kept pushing and they kept saying anxiety, fibromyalgia, depression, all sorts of BS. I finally found a good DOC here in Vegas and he did the right blood work and was diagnosed. Even my own family didn’t believe me at first. Anyway, here we are 10 months later and still waiting for treatment. They prescribed Prednisone and hydroxychloroquine. Dieting, eating healthy, light exercise helps. It’s a slow process. Good luck to everyone and 🙏🙏 🤗🤗

[nicolehasting]

I'm crying watching your video because this is similar to my experience too!
My blood work was entirely off for years, my hair fell out in clumps, and my pain level was immense daily; from the age of 26! I have never been a complainer, but my muscles were weak, my skin hurt, the exhaustion level was entirely consuming and I was frustrated with my body and myself.
I was told I was "depressed" for six years while my body ate away at itself... because of Lupus.
I lost several teeth and nearly half my hair at the at of 29. An orthopedic surgeon saw my spine deteriorating, due to severe arthritis, and told me to simply "pray to God for healing".
No one believed how sick I was until I was hospitalized with kidney failure at the age of 30 and suffered life-threatening sepsis. I was hospitalized for seven weeks.
I have finally been diagnosed with Lupus for about four months now and am 33.
My kidneys are shutting down, I have high blood pressure, my liver is declining daily and my bones ache every second; I could have gotten help sooner if I screamed at my doctors and insisted to test me for EVERY blood test years ago.
I cannot stress how serious Lupus is.
The severe body aches and swelling are no joke.
Get help and be an advocate for yourself if you even think you might have symptoms. The sooner you get help the better!

[nbitsme]

I was called a hypercondriac for years it caused me to have severe depression and anxiety.

[tashanabernard]

I just found out that I have lupus and iam praying to God that we can heal from this sickness

[suzanneladue]

Hi
Lupus and Fibromyalgia are no joke. I have both. Daily battles are found to go better with prayers and extreme diet change 🙏❤. Know this, Lupus does what it wants. Keep in prayer 🤲

[RebaMiran]

Thank you for sharing your story, I had lupus for 8 years now and along came other chronic illnesses… it’s hard but having a good support system and finding things that make you happy can help you to cope. It’s not easy though some days you’ll cry and some days you won’t cry… but you just keep going.

[rimasuki]

Very nice video. I've had it since 1996. It's been a battle. Caused some financial hardships. Exhaustion is the hardest to overcome for me. I'm pushing through and did the same research back then. I'm now trying the TBSP of light virgin olive oil. It's a hard disease for others to understand. I was accused of being a hypochondriac, being lazy, all sorts of mean things. Good luck to all that, unfortunately, join this club. Take care.

[shaunikasellers]

Well I’m 44 with a positive ANA and Sed rate.

I was just admitted to the hospital with a high fever and possible sepsis. I think this cause a flare up.

I have been having all o er body pain for about 3-5 years now. What found it is that I thought I had carpal tunnel and went to a workers comp dr, who rad blood work and found the above positive tests and send me back to my primary who then referred me to a rheumatologist.


I m now experiencing chest pain, shortness of breath, scaly patches on my skin, sores on my tongue.


I have to see cardio, rheum, and pulmonary doctors.


I go to the rheum in January.

[lbjsweetp]

I love the 2nd doctor the most. He realized that he wasn’t what you needed and that took a lot

[IBLVDOU]

Thank you for sharing! I have fibromyalgia and just diagnosed with Lupus two months ago. The rheumatologist prescribed Plaquanil, but could be months before it starts working.
Hearing others struggles makes me feel like I’m not crazy. Thank you for sharing your story and details. I hope you continue to improve!

[khiawishart]

I have my first ever Rheumatologist appointment in 4 days, and I’m so nervous. I already have autoimmune conditions such as Hashimotos, and I think I have Lupus due to all of my symptoms. My mum has RA.
I get a red rash across my cheeks and nose, tingles, pins and needles, dry eyes, nausea, severe headaches, jaw pain, shooting pain through all my limbs, ulcers on my tongue, cannot regulate my body temperature, rare nerve condition, vitamin D deficiency, iron deficiency, anaemia, high calcium, kidney readings go up and down constantly, liver enzymes are constantly high, I had acute hepatitis of the liver out of nowhere and was hospitalised with that and a small bowel obstruction, I had an acute attack of my gallbladder and had to have an emergency removal of my gall bladder at the ER, brain fog, 5 miscarriages and no successful full term pregnancies, muscle twitches, restless legs, constant diarrhoea, endometriosis, chest and heart pain, psoriasis on my scalp, overactive bladder, endometriomal cysts, fluctuating bloods for so many of my FBC’s over so many years, Migraines, sore and aching joints, stiff ankles, sciatica, 2
In the sun my skin stings and I burn easy and the face rash flares up after being in the sun, 2 herniated discs in my back as well as periarticular sclerosis of my SI joints, I was also hospitalised a few years ago with a chest infection and costocondritis.. the list goes on and on and on.. and I’m just exhausted and just ready to have answers and a name for what is happening to me and my body.

[kaihuiwong]

I don't know why but I just teared up when listening to your sharing, as a newly diagnosed person.

[suzanneladue]

Thank you for the video. I also went to the doctor by myself. Also had a " Board Certified" Rheumatologist tell me she knew nothing about Lupus 😮😢. Immediately i prayed, cried, and prayed again

[whittneyp]

I'm glad I found your video . Your symptoms are validating. I'm in the process of getting a clear Dx . Sometimes hitting walls with Drs is so hard and so real

[arianaferraro]

Thank you for sharing. I just got diagnosed two weeks ago. Also at 24, also during a period of intense stress (I originally thought maybe my symptoms were because I depressed), and terrified of needles. It’s been hard to deal with knowing lupus will never go away

[jlastre]

While I understand being hesitant to take drugs Lupus isn’t something that, in general, will be managed via a diet change alone. I saw two friends die of it in the 80s. I have newly been diagnosed and thankfully things have changed. It did take me about three years of complying to my PCPs and pushing for it to be found. The fist PCP to whom I described the symptoms was useless. The second kept running blood panels until it was found. My biggest advice is once you know you have to confront it. Getting depressed isn’t going to help. And yes I know it’s easy to say but my family had a history of depression as well so I know I can easily fall in that hole. Keep moving forward and participate in your management. Peace and love.

[shawnalyles]

I was just diagnosed, and everything you are saying 😢I went through!

[divineinfinitewisdom]

Thank you and becoming a smart patient is something lots of doctors are allergic to, sad to say, but very true!

[straighttothedisco]

This was a very reassuring video. I already have an auto-immune disease, and I was kind of pushing against lupus despite having such a strong sun “allergy”. I had such a bad joint reaction recently, and hair loss and asthma flair up. I’m getting referred to a rhum this week, and I’m 90% sure it’s lupus. I am so happy a gen doc that I saw recognized the symptoms right away. I was walking in knowing I had lupus but I so badly want to believe it could be something else, it was tough getting the call that I absolutely need to see a rhum after my blood tests. She held me so gently and told me that she wanted to be sure it wasn’t chronic and I’m happy she did but I could hear she was dreading calling me. I wanted to console her! lol I wanted it to be something else. I actually got a weird symptom during my flair of my eyelashes growing extremely long. I was happy about that until I learned it’s an SLE symptom LOL. I get no peace!